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Cataplexy: Is This What It Is Like...?


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#1 drago

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Posted 17 September 2010 - 04:41 PM

Recently, I have started working on a show where many childhood games are involved (ie: soccer, keep it up, foursqure, etc.) And so we've been breaking sweats playing these new games for this production as warmup activities.

For two nights in a row while playing games like Keep It Up or Tag! -- there has been a point where I was out of breath and tired from the workout, and then I laughed. The laughter made me tired in a different way, in a flimsy/weak sort of way. When the ball came my way again, I couldn't hit it because I wasn't focusing on the game, I was too tired at the time, despite having just played.

Is this cataplexy? The feeling went away quickly and came quickly. I was diagnosed with narcolepsy without cataplexy, but I heard cataplexy could come later.

Is this similar to your early cataplexy experiences? Or do you think this could just be me being overtired/stress a little? It has only happened twice (and during the same busy, stressful week) but I am not sure if I should talk to the doctor yet.

Thanks,
drago

#2 Linna

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Posted 19 September 2010 - 03:08 AM

Recently, I have started working on a show where many childhood games are involved (ie: soccer, keep it up, foursqure, etc.) And so we've been breaking sweats playing these new games for this production as warmup activities.

For two nights in a row while playing games like Keep It Up or Tag! -- there has been a point where I was out of breath and tired from the workout, and then I laughed. The laughter made me tired in a different way, in a flimsy/weak sort of way. When the ball came my way again, I couldn't hit it because I wasn't focusing on the game, I was too tired at the time, despite having just played.

Is this cataplexy? The feeling went away quickly and came quickly. I was diagnosed with narcolepsy without cataplexy, but I heard cataplexy could come later.

Is this similar to your early cataplexy experiences? Or do you think this could just be me being overtired/stress a little? It has only happened twice (and during the same busy, stressful week) but I am not sure if I should talk to the doctor yet.

Thanks,
drago



#3 Linna

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Posted 19 September 2010 - 03:14 AM

I don't suffer from catalepsy and have not been diagnosed with such. I have the same type of thing happen to me though. I am not that young and active anymore. (41 years old) My husband likes to kiss me when I get home from work. I find it completely exhausting to kiss while standing up. I run out of breath and feel an overwhelming need to sit or lie down. I just make a beeline for the bed. I don't even realize that I am ignoring his affection sometimes because I feel like I am gonna pass out. NOT sure if this helps maybe someone with catalepsy will respond.

#4 hyperlexic

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Posted 19 September 2010 - 11:41 PM

Regardless of whether or not it is cataplexy, it isn't normal. Talk to your doctor. I often have cataplexy induced by exercise induced asthma. Cataplexy can be so difficult to describe to others. It's not just muscle weakness, it's kind of like when a limb falls asleep. The biggest difference being that there is no numbness. Cataplexy is made worse when sleepy or feeling strong emotions. I also get cataplexy whenever I am in any pain. Sorry if my thoughts are scattered, but this is the only way I can keep alert enough to answer your question. Experiencing cataplexy for the first time is sure to be distracting. Often after it happens I just flop down somewhere and fall asleep. It's important to realize that while it usually happens when tired, it isn't part of the average person's experience with tiredness. It's not normal to stumble or be unsteady after kissing except in cases of cataplexy. No amount of tiredness should make you unable to stand (unless you are asleep). Tiredness can make you bump into walls from inattention, but it can't make your knees wobble or your head bob. If you want more information, email me at hyperlexiclinks@gmail.com

#5 JLyn

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Posted 22 September 2010 - 12:05 PM

Recently, I have started working on a show where many childhood games are involved (ie: soccer, keep it up, foursqure, etc.) And so we've been breaking sweats playing these new games for this production as warmup activities.

For two nights in a row while playing games like Keep It Up or Tag! -- there has been a point where I was out of breath and tired from the workout, and then I laughed. The laughter made me tired in a different way, in a flimsy/weak sort of way. When the ball came my way again, I couldn't hit it because I wasn't focusing on the game, I was too tired at the time, despite having just played.

Is this cataplexy? The feeling went away quickly and came quickly. I was diagnosed with narcolepsy without cataplexy, but I heard cataplexy could come later.

Is this similar to your early cataplexy experiences? Or do you think this could just be me being overtired/stress a little? It has only happened twice (and during the same busy, stressful week) but I am not sure if I should talk to the doctor yet.

Thanks,
drago


So, I have had cataplexy for over 10years now and what you describe doesn't sound like cataplexy to me but I definitely would keep an eye on it. I remember first getting diagnosed with N and C and how I literally took daily notes of my naps and episodes of cataplexy so my doc could determine the magnitude of each. When cataplexy happens to me there is absolutely no question about what it is and despite the examples I will share with you, I still have a very mild case of it (almost completely controlled by Vivactil-generic is Protryptiline.)

It happens to me when I am either very excited for something, or very sad/depressed, very upset, and most often if I find something funny. I have memories in highschool of never being able to select softball in gym class because when it was my turn to bat I would get so excited I couldn't even hold the bat properly because C would set in and my arms would go limp. Also, I remember ending a relationship with someone in high school while standing in the driveway and the extreme sadness/hurt caused my knees to buckle and I went down. It isn't like I tipped over it was the buckling of the knees to a squat position. I vividly remember my Junior and Senior years in highschool and telling jokes while walking to classes and I would have to stop to lean up against the lockers or hall walls. Then there were times in college where friends thought my C was hilarious and they would just try to get me laughing so hard that i couldn't stay sitting on my bed & one time I fell and crushed my glasses. These were extremely funny things that made my arms limp neck limp and I couldn't remain in the sitting position and couldn't use my muscles to stay on the bed. The laughter that typically causes my head to drop and chin to hit my chest happens probably 3x's a week and it is ALWAYS worse when I'm extremely exhaustingly tired. When the cataplexy happens it is only for a few seconds for me and I don't understand why people say they fall asleep because I am completely conscience- I just can't speak or use my facial muscles for the 5-20seconds. Just last week I was watching a friend's 3yr old and I went to tell her (again) that I don't allow people walking on furniture in my house and the little bit of anger I got triggered a slight episode of C that sorta slurred my speech because my face muscles wanted to go limp; I can only imagine what a child must think seeing/hearing that.

The most scary cataplexy I get is when I'm in water(not a shower or bath). Of course living in Upstate NY we have a lot of lakes and it seems everyone I know lives on one so this continues to be a challenge. I almost NEVER go in the water alone even on my medication. Maybe it is the excitement of wanting to jump in or just the love for water but if the littlest joke gets me laughing I can't hold myself above water. This year for the first time which was a bit embarrassing for me I had to keep the life jacket on the entie time I was in the water so I wouldn't go under even though I'm a good swimmer. I wish more Dr.'s were aware of this because I think this is the scariest part of having N and C. It's an automatic panic attack with no muscle control so you can't kick or paddle your arms. Very Scary.

I believe my cataplexy has only got minimally worse since my diagnosis 10years ago. I am not certain if it will get worse as I age. I am almost 30 and despite a BA in Employment Relations I cannot find work and have now considered a job in the medical field simply for the demand and that hopefully it will lead me to a sleep lab. After the recent mandatory requirement here in NY of being a Certified Respiratory Therapist(degree req'd) I am hesitant that some of the extreme scenes and scenarios may trigger cataplexy in an emergency. Recently asked a professor to assist me in shadowing a RT and his response was "Respiratory therapy is a life-support profession. Because this training program is quite stressful and, as a student, you would be providing care to critically ill and injured patients, I am concerned about your ability to practice respiratory care safely, for both you and the patients. A sudden loss of muscle tone when providing CPR, intubating a patient, providing manual ventilation during patient transport, or moving patients could result in serious injury or harm to a patient, as well as to yourself. A respiratory therapist must be able to manage and respond to strong emotions appropriately and safely when providing care to trauma patients, emotionally disturbed patients, belligerent and rude patients, children and infants, and others. As a student in this program, the majority of your training would occur in the critical care units of our affiliate hospitals where you would experience many disturbing and upsetting things." Please keep in mind I'm sure cataplexy affects everyone differently if at all. Be sure to tell all family and friends so they have an understanding of both and what they can do to help should you be in an environment or situation which encourages N and C to takes place.

I have a million different examples of C that I could share but this is wordy enough. Oh yeah, the first time I knew my C was under control was when I could ride a Razor Scooter(that was what was cool at that time) throughout the Eckerd store I worked at; at that time I was taking Vivactil(Still am-dosage never increased). I remember not even caring if I got fired for it because I had control of my arms and legs even during a very excited mood. It was such a rush...in a dorky Cataplectic way.

-Jessica

#6 PJL

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Posted 26 September 2010 - 10:39 AM

My doctor just told me last week that she believes I have C but not N. My head goes limp along with my arms and my legs and the left side of my face drops. It only happens when I get angry, doing an activity that involves walking or when I am really tired. I get a strange feeling in the top of my head right before it happens. I have read that a lot of people have a trigger of laughing. Everyone is different. You should just take notes of everything you are doing before it happens each time. That should help your doctor. Mine has been happening over a year and a half. It may take time to diagnose but be patient with your doctor. There is very little known about C. I have been all over the internet looking for information. Most of the time it is connected to N. My doctor told me not to look at the information that is connected to N. Only look at the information on C by itself

#7 mayfield

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Posted 27 September 2010 - 03:23 PM

I didn't think I had cataplexy...although based on a hla typing/talking to the dr. they decided I do have mild cataplexy. I can only remember two times of collapsing the way Jlyn described; I didn't flip over, it was like losing all strength in my body with my legs buckling.

But the one time I notice it on a regular basis is when I'm running and I'm daydreaming. I'll usually have very vivid day dreams (I think this is normal...I'm just sort of spaced out as i run). But, If I happen to think of something *really* funny while daydreaming, my legs will buckle or I'll lose a step. It's over in a second and it's only with funny thoughts. i can daydream of sad things, angry things, happy things...and it doesn't happen. I have a weird sense of humor, too. :)

I think keeping a record is a good idea, and talking to your doctor. Good luck!

#8 SubtleGrace

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Posted 20 March 2011 - 12:49 PM

I am not sure this is Cataplexy, but what happens to me is I will get a sudden wave of sleepy, I can't hold my head up, focus my eyes, move my limbs. My eyes close, and if I just rest there, for a few seconds, I come awake again and I can start to move. I can hear everything around me, so I am not asleep, but if I happen to be sitting or lying down when this hits, I can fall asleep if I let myself, but usually not. I never thought of this as cataplexy until I saw some crazy Valentines Day report on tv about a guy with narco who falls asleep whenever he thinks about his love for his family. On the show, they were sitting in chairs being interviewed, when he just dropped his head and fell "asleep". The reporter got concerned, and asked the wife "Can he hear us?" and she said yes, he was still there, he just couldn't move. I said "Bingo!" that's how it is for me.

I have occasionally fallen but again, it is more like I described above than a "sudden muscle weakness".

Anyone else?